The day my youngest son was born, our family felt complete. He entered the world in the very early hours of the morning and made our little family whole. We went from a fun four to a fabulous five, and I was filled with so much excitement about what the future held.
I remember the very moment they put him in my arms. He opened his eyes and looked straight at me. It felt like in that split second he saw right into my soul. “You are going to move mountains,” I whispered. I just knew this little boy was going to do very great things. Little did I know just how great those things would be.
In the days and weeks to follow I was taken over by exhaustion. It seemed like right from the beginning, Maxim. Never. Slept. Most babies only sleep an hour or so at a time. They aren’t expected to sleep long stretches, and Max wasn’t my first child. I was no stranger to lack of sleep. But it was different with Max. Our sweet boy truly never, ever slept. He had colic and there was absolutely nothing we could do to calm it. How could his tiny body wail all day and night and not tire out...ever? How uncomfortable he must have been!
We definitely tried all the things, from gripe water to special diets for me since I was nursing, to swaddling and white noise. We bounced, rocked, sang, shushed, drove, and walked. I think Maxim cried for his first 4 years of life straight.
When the colic didn’t end we wondered if it was reflux. When reflux medication didn’t help we thought it might be his ears. When the ear and sinus infections were under control we thought maybe he was frustrated because he wasn’t able to talk or move the way he wanted. Maxim had missed many milestones and we knew his battle with colic and then ear and sinus infections couldn’t have helped. He had most definitely been in pain.
Don’t get me wrong, Max smiled and laughed, but to be honest, it wasn’t often. He responded to his name, but that was rare too. Out of what seemed like nowhere he would cry and sometimes even rage. What was it? What was happening inside? Our little boy didn’t lack joy or giggles, but it was as if at the time they were trapped inside.
At around 12 months, even before he had tubes and his adenoids removed, when Maxim wasn’t crawling or scooting we called for our first Early Intervention Evaluation. He wasn’t talking or babbling. He wasn’t moving very much, and he hadn’t yet pulled to stand, but he did rock. He loved to rock back and forth.
We had a team of individuals come in for his first evaluation. We made more doctors appointments with specialists, saw the regular pediatrician, and got second opinions. Everyone agreed, Maxim was definitely behind. He needed speech therapy, occupational therapy, physical therapy, and a special teacher to help him learn the things that babies learn.
“Why is this happening? Is there a reason he isn’t reaching milestones?” I constantly asked questions and looked for the reasons Max wasn’t talking or walking. “Will he catch up? Will he be ok?” It started to consume me. When we asked the experts we heard similar things, and totally opposite things, and everyone had an opinion that seemed more overwhelming and scary than the last. However, one thing that Everyone said when I asked if he would catch up was, “You need to wait and see.”
“Wait and see?” “Wait and see!?!?!?” My little boy was struggling and falling behind, and I needed to know he was going to be ok. How could I, “Wait and see!?”
I had heard words like, “global developmental delay,“ “sensory processing disorder,” “gross and fine motor delays,” “characteristics of autism,” and “severe speech and language delay.” Even though it is not politically correct to say, I also had a doctor tell me when Max was just 12 months old that his findings were, “consistent with mental retardation.” How could this be?
The last statement, more appropriately referred to as an “intellectual disability,” was one that corresponded to Max’s inability to produce a normal amount of cholesterol. Max didn’t have any other syndrome or findings that tied his lack of cholesterol to a genetic or metabolic diagnosis, but it was low enough for the doctor to think there was something wrong with the white or gray matter, I don’t recall which, in Max’s brain. The doctor said, in different words, that an intellectual disability was a future possibility, but also maybe not, and we would just have to…”Wait and see.”